If a mother is mourning not for what she has lost but for what her dead child has lost, it is a comfort to believe that the child has not lost the end for which it was created. And it is a comfort to believe that she herself, in losing her chief or only natural happiness, has not lost a greater thing, that she may still hope to ‘glorify God and enjoy him forever.’ A comfort to the God-aimed, eternal spirit within her. But not to her motherhood. The specifically maternal happiness must be written off. Never, in any place or time, will she have her son on her knees, or bathe him, or tell him a story, or plan for his future, or see his grandchild.”

-C.S. Lewis, A Grief Observed

Since my infant son Ronan’s terminal diagnosis, several people have told me, in letters or in person, that God has chosen my son for a special purpose, which is this: to be an angel, in heaven, with Jesus, when he dies. Apparently Ronan’s angelic afterlife was pre-ordained, and I am lucky to be his mother because so few people would be strong enough to bear up so beautifully under this burden. Plus, conveniently, he already looks like a stereotypical angel – chubby, gorgeous, delicate-eyed, his lashes and eyebrows and skin as pale as summer light – and I truly am special to have received this messenger from God, who must really dig me. Still, it’s not easy, all this heavenly love, and some believe I should be sainted. You heard it here first.

And here I’d been so worried about where Ronan was going after he dies! Up at night, sleepless, howling like a dog at the ceiling wondering where and how and when and why. I was tested for Tay-Sachs; how was I to know I had a rogue version of the gene that could only be detected through DNA sequencing? The average life span for kids with Tay-Sachs is two to four years. How long will he live?How thoughtful for strangers and other folks to help me just go ahead and wipe that off the list of worries. I’m not just some grieving mom preparing to lose her son to one of the worst diseases of all time (and this is objective, a neurologist called it “the worst”), not me. Like an angel oracle, like not-so-fun-loving Gabriel, the fact that Ronan will have seizures, go blind and deaf and paralyzed before the age of two – well,Emily, God knows best. That was the plan all along, and I should be grateful for each and every moment I have left with Ronan before he stops breathing and is spirited away into the heavens, leaving his father and me behind. I should get down on my knees and just be glad and pray for the strength and courage God will give me if I ask for it.

The story has some variations, although fewer than you might imagine, given the number of times I’ve heard it, and it is delivered in various ways: like a proclamation, as in oracles of old; whispered and hushed like a secret, almost gauzy, and sometimes I get a light touch on the arm when the story’s all through; sometimes in a voice so dripping with sadness as the person is telling me, tearing up – Oh, it makes me so sad – as I stand there stone-faced and thinking two words: Fuck. You.

The “logic” in this Ronan-is-already-an-angel story, this mother-as-suffering saint narrative, if indeed we can call it logic, is too ridiculous and offensive to even qualify as magical thinking, which at least would involve, presumably, some fun magic tricks of the mind, some brain gymnastics or at the very least some imagined scenarios that made a stab at being wildly or even mildly original. Nope, no magic here, just a regurgitated set of platitudes, “something that people say” (if it’s “something that people say,” I’ve learned that it’s probably best not to say it), and yet people who truly love and care about me, all of whom are trying to be helpful and supportive (albeit in a 1940s Sunday School dogma kind of way), have encouraged me to believe in this view of the afterlife. And it is, quite simply, bad theology for all of the obvious reasons stated above. Theology is not supposed to chuck reason and logic out the window; it’s supposed to make sense, not defy it. It’s supposed to feel true in the heart and in the head, and Ronan-As-Angel does neither. These supposed truth tellers, having executed their tales, get to go along on their merry ways. I’m the one who has to live with this question about the afterlife and my son’s role in it. So, there’s some “prize” for walking this ludicrous road? How is that possible? Ronan is lost. There is no compensatory gift. There is no consolation prize, or, actually, any consolation at all. What to do?

Create a new afterlife, maybe; perhaps this is the most crucial part of Ronan’s myth. I love all of David Eagleman’s afterlives.

The afterlife is all about softness. You find yourself in a great padded compound…A hard surface is impossible to find. Feathers pad everything. – From “Giantess”

Other tactics: compassion mixed with an old trick called “turning the tables.” For example, when someone else is sitting in a messy old pile of shit, it’s easy to wax on about the existence of a higher purpose for what they’re experiencing, which is: gut-twisting stink, a big wet mess that sticks to everything and cannot be effectively mopped or swept away; embarrassment and shame and despair about the above. It’s easy to say, on the other side of the stink fence, that the person in the shitter must belong there and that in some distant world beyond, not so far from now, just hold on, just wait, it’s on the way, God has other plans for that person’s after-shit, their after-life, which will be odor-free, happy and perfect and cleaned of all sorrow. It’s what people in power used to promise other people who were enslaved; they would hold out the promise of the afterlife as the only possible place of redemption. That way they could keep on whipping them, working them to the bone, exhausting and starving them, and treating them like rodents; like slaves. At George Washington’s estate in Washington, D.C., you can see the kinds of conditions slaves were living in, and that’s just an approximation; you can listen to stories about the horrors they endured; you can hear spirituals that slaves wrote and sang in an effort to shine a forward light into that after-life as a way to keep going, to stay sane, to stay human. Mournful songs burning in the darkest tunnel. Thinking about it makes me feel physically ill. The heart sick. Early liberation theologians identified this odious logic about what people’s lives were about, or for. They said No, you deserve to be treated well on the earth, today. You don’t have to wait until you are dead to live. This knowledge, which was a kind of demand, was meant to be a new torch. Liberating, indeed. And people gave their lives trying to convince others to believe it.

How about this other trick called “putting things in perspective,” something else I hear all the time: Thinking about how horrible it must be for you really puts my worries into perspective! All fancy ways of saying thank Christ I’m not you! I wonder if life in the angelic realm would seem so enthralling to folks if they were about to enter it themselves, perhaps if someone held a gun to their head and exclaimed why so freaked out? In a matter of seconds you’ll be an angel, isn’t that terrific?! Or, as the Misfit says in a voice cleaned of malice or pity or kindness in Flannery O’Connor’s story A Good Man is Hard to Find, a story without a single crack of light, theological or otherwise, She would have been a good woman if there’d been someone there to shoot her every day of her life. Preach! I wish more people would think like Flannery. And I wonder how many of the people extolling the virtues of my situation, as if I’m some kind of Biblical figure who is given a hope-killing yoke to drag around until another angel (this one, presumably, on a different mission) flies by and actually says, in a deep, enchanting voice, No, no, it’s a gift, this is God’s will, sit around thinking and worrying about the afterlife, often all through the night, as I have done since Ronan’s diagnosis. What happens to us when we die?

Ronan the Angel is not going to cut it, even if he fits the physical stereotype, which is problematic on so many levels (i.e., babies on cards are often presented as blond, white and blue-eyed. We demand diversity in our depiction of angels!) The very image – its simplicity, its silliness, its not-so-vague dependence on the stock images of the angels of mall decorations and Christmas ornaments and holiday decorations and bulk valentines from Wal-Mart makes me want to cry, or scream, or just put my head in my hands. But, alas, my angel and I are busy; we have other things to do besides polish Ronan’s 14K gold halo, his bling, and make ready for…what, exactly?

I don’t live in the afterlife, I live in the right now, in this world, today, with my dying son and the saddest father in the world. I don’t want an angel (and neither did Mary or Elizabeth or anyone else in the Bible, so why angels are depicted as sweet harbingers of heavenly comfort and joy I have no idea; maybe it’s just for the purposes of making the lyrics of Christmas carols rhyme sweetly). I am anti-angel and anti-angelic. I am an angel hater. They are the brash bullies and the sneaky mean girls of heaven, doling out bloody noses and backhanded compliments. They talk about you when you’re off on another cloud and then smile at your face and pretend to love you. They snort angel-dust (obviously) when God and Jesus are distracted at the gate of heaven with St. Peter, busy checking lists with Santa Claus and the Easter Bunny, the Tooth Fairy giddily floating above them, supervising and barking orders, for some reason, in French. I don’t want Ronan running with that crowd of angels; they’re bad business, a nasty influence. I want my kid here in this world, right now, to be able to live without getting his brain squashed by a stupid illness that I gave him, didn’t know I had, and for which there is no cure and no effective treatment. If old school theologian J.A.T. Robinson is correct in saying that “Man does not have a body, he is a body,” then Ronan truly got the shortest end of the stick, if he even got any of the stick at all. He’s gorgeous, yes, but a fat lot that it going to do for him; for Ronan, beauty can only do much and even if he had carbuncles growing out of his face he would still be exquisite. No answers in the beauty competition department. As Weil notes, “beauty always promises, but never gives anything.” Exactly.

But still, there is the issue of Ronan’s beautiful body. If we bury him does it just rot and disintegrate in the ground; if we opt for cremation are the ashes thrown to the sky and float away and that’s it? It’s hard for me to imagine the little body that I made going out, going away, leaving, never seeing it again, when he was so alive for so long – first in me, literally the first moment, and then in my arms, literally his first breath, and then in our world. He was created. His heart beat its first living pulse just beneath my skin. He lives, for now. And if he was created then he must endure somehow, in some world, right? Will Ronan get a new, duplicate body in heaven as people have often told me that I will? A better, de-crippled Emily with two “real” legs (but what is real in the afterlife?) and a baby Ronan angel: is that how we will recognize one another? Will he be allowed to age? Who will cut our hair or will it just stay in one particular style? Will Ronan simply begin again as a baby and grow up in heaven the way he didn’t get to here on earth with two parents who loved him madly? If this world runs parallel to that world might I get a glimpse of him then, from the other side, making play-doh castles, toddling, learning to read, writing his name in the front flap of a book, going through the requisite Goth stage as a teenager? Why is that scenario any less likely than the fact that God would have intentionally stitched a terminal disease into an unsuspecting baby before a quick turnover into an angel, the rules of the game changed before it even began? Really?

Emerson explained Plato’s notion of the separation of body and soul in this way: the body was the prison and the soul was like “an angel in a slot machine” (Life After Death, T. A. Kantonen). (In the early 90s, when I was a cashier at the Kmart in Kearney, Nebraska, twice a month I would walk to the back of the break room, say “RAPP” through a small hole at the top of a small door, and an unseen hand would lift the bottom part of the door like a drawbridge and shove an envelope of cash through its mouth. Pay day angel in a slot machine.) T. A. Kantonen is hardly a revolutionary theologian squiggling outside the lines of the accepted dogmatic box – he clearly missed the memo about inclusive language, but perhaps it hadn’t been written yet. In his slim little bullet of a book, Life After Death, published in 1962 by the nice Lutheran-German-sounding Muehlenberg Press, T.A. unpacks Plato’s argument for immortality “on the ground that the soul is a simple indivisible substance unaffected by the dissolution of the body and capable of identifying itself with imperishable values.” Phew! Leaning on William James, himself an empiricist, Kantonen explains that many believe that “the death of the body does not eliminate the possibility of the survival of the soul, although the necessity of finding a new instrument does remain.” Enter angels. But why just angels? Surely God can mix it up a little and choose another winged creature to help him out, or just choose from a bigger pool of critters in general. What about donkeys and chickens and ants and spiders and pigeons and cows? Does one get to choose one’s new body in the afterlife, or is there some kind of weird heavenly lottery system or points system (like those for immigration policies and work visas) so that depending on what we’ve been up to here on earth, you’re either transformed into a gobble gobble turkey destined for a holiday table or a flashy, fabulous stallion who is kept as a beloved pet? Do you get to be a measly fire ant or a magnificent, multi-colored beetle with a real face that can make honest-to-goodness expressions like the bugs they have in Texas? I just smashed a fly against my desk; there’s a pin drop of magenta blood smeared on my notebook. Was it/she/he a who and not a what? Anyone?

Kantonen goes on to say that in Biblical terms, man is not defined by a spiritual or physical body but “by his relationship to God.” This does not sound very hopeful or concrete, even less so when it seems to come down to a neat trick of translation, or, rather, an inability for English speakers to fully appreciate what the Bible might have been getting at. Soma, the Greek word for body, is used in the Greek translation of the Old Testament as a stand in for eleven different Hebrew words. Basar requires two Greek words for translation: sarx (flesh) as well as soma (body).“The human organism has no status in its own right, nor does it serve to mark man off from other men or the rest of nature. On the contrary, it ties him up with ‘all flesh,’ the whole of bundle of created life. Nephesh, the word for soul, stands primarily for the life of a body. The Ruach or spirit or breath of God is the source of all life and makes men live. Leb, meaning heart, stands for man as a whole view.” So a turkey is a bee is a flower is a fern is any life form. Life is life is life. But where does Ronan, the essence of my little guy, where does he go? Do non-Christian perspectives offer any comfort in this regard?

Ronan, where are you going? Literally beyond me. When did you begin? Was I asleep in our Brentwood studio, late-night traffic still a low and steady hum blocks away on Wilshire? Was I writing at the Novel Café in Venice, looking across at Wendy and batting flies away from my eggs salsa verde. Where are you going? Will I be walking down the street someday and recognize your multi-colored, thick-lashed eyes in the pale face of another little boy? Will I catch the edge of your mellow sweetness in a neighbor’s dog that nuzzles my hand in the street? If science tell us that energy never stops completely but is endlessly recycled, does this mean that Buddhist notions about reincarnation and the transmigration of souls have some truth to them and that death is just a gateway to a new experience? Or is energy tightly packed up in the Christian heaven, itself a kind of holy clearinghouse for souls or energy bodies roaming free, released from the bonds of physical impediment? Both concepts require that some element of that person is sustained, endlessly protected, and in some sense living on – the essence, the soul, something. And I’m also thinking about karma, this notion that each of us must live out old stories that are unknown to or at least well hidden from us in this current life, which seems both unfair as well as an inadequate way of explaining the unfairness of life.

Overwhelmed by Kantonen and karma, I wandered to the bookcase and thought Poets! Help me! I found this poem by my friend Phil Pardi, itself from a book of meditations:

Drinking with My Father in London

With his mate, Wilfred, who was dying

I discussed ornithology as best I could

Given the circumstances, my father flushed

And silent, a second pint before me,

My fish and chips not yet in sight.

Condensation covered the windows

and in the corner a couple played

tic-tac-toe with their fingers.

Behind it all, convincingly, the rain fell.

The mystery, Wilfred was saying, isn’t flight.

Flight is easy, he says, lifting his cap, but

landing – he tosses it at the coat rack –

landing is the miracle. Would you believe

thirty feet away the cap hits

and softly takes in the one bare peg?

Would you believe no one but me notices?

I’d like to come back as a bird,

Wilfred says, both hands on the glass

before him, and here my father

comes to life. You already

were a bird once,

Wilfred, he says, next time

next time you get to be

the whole damn flock.

What do I believe? I believe that I am sad, and that I will always be sad. Beyond that, I have no idea. My belief is short-sighted and myopic, as most beliefs are.

This February after a Skype session with a past-lives healer, as I struggled to digest what he had told me – that Ronan had been a healer in another life, a very rare and well-known boy healer in upstate New York who had died young as a result of accidentally ingesting poison – Paul reminded me that it doesn’t make sense to believe in something that is unbelievable just because it makes you feel better. It’s what I’d been hoping for as the healer, a gentle, blond man speaking to me in a soft voice from Denmark, also revealed that Ronan may have lived in Peru at one time and that he had chosen Rick and me as his parents because he knew we would take care of him and that we could handle it. I wanted to believe him. I waited for that flash of faithfulness, that lightning certainty that would rocket through my heart and electrify my mind as it had for Paul (the saint, not my friend) on his way to Damascus, a conversion experience that would illuminate the truth in a single, unquestionable flash.Instead, our overseas Skype connection kept shorting out, the screen shifting every few minutes to fuzz. After a few moments I’d see the healer’s wife on the screen, adjusting the computer and muttering in Danish before stepping aside and allowing her husband to continue the session. “So sorry,” he said each time. “Now, back to Ronan.”

On the other side of the screen, in those trembling and thunderous first few weeks after Ronan’s diagnosis, I sat practically steaming with terror. “Terror breeds apocalyptic visions,” a religion professor once told me when were discussing the origins of the Book of Revelation. No shit. Paul’s comment that it was impossible to believe in the unbelievable just to find a way of moving through a difficult experience – or even just a single day — was absolutely correct. But he also talked about how he believed in the power of stories to make life cohere, to create a necessary order around us, and that this can, in turn, help us fully live. And all of the notions of the after life – even the angel-related ones I find sickening — are, of course, stories. People may ardently believe in them, as incredulous as they are to non-believers, but the truth is that nobody has come back to verify the facts of anybody’s vision of the afterlife. No empirical evidence exists. Nobody knows anything for sure. Not Kantonen, not St. Paul, not the earliest translators of the Bible, not the redactors of the Bible itself, not even Jesus, who did most of his talking about the afterlife and what it meant and how we would get there before he died. What happened to him after, in that beyond, is purely conjecture. We can only believe in what we’ve come to accept as truth. We only have stories. In one of her songs, Neko Case sings: Voices that did comfort me/furthest from my sanity/come from places I have never seen. Even in my darkest recollections/there was someone singing my life back to me. In my friend Barbara’s letter from around this time she reminded me of the scene in one of Philip Pullman’s novels when Lyra must tell stories in order to set the trapped souls free, and how the experience nearly kills her. In Buddhism we’re invited to see ourselves as part of the natural cycle of birth, aging and dying. Stories: they’re all we’ve got.

But all the old stories fail me (I think of the hymn “The Old, Old Story”: “I love to tell the story, the old, old story, of Jesus and his love.”) Belief in anything is difficult for me these days. One morning I woke up while it was still dark outside, misread my alarm clock, and found myself convinced that the sun was not going to rise. It was three in the afternoon, the world was ending, and I felt completely relieved. My private apocalypse had finally spilled over into the larger world. I wouldn’t have to explain a single element of my personal tragedy. Everyone else would he having one as well. Bad karma, I heard a voice inside of me say. You’ve got to give love to get love!

The notion of karma is troubling me because it feels like something real to hook into and isn’t attached to a unique, gendered deity to whom I’m supposed to feel indebted for my life. It feels the most true and yet it’s the most problematic because it seems the most closely linked to retribution, to punishment, even if it is not inflicted by a God or a God-like being.

“In the summer of 1819, she could think of nothing but her loss. She had been a mother three times; each time, the child had been snatched from her. ‘Oh, oh, oh fate, cruel giver of evil gifts, almighty shade of Oedipus, black Erinys, how overwhelming you are,’ Shelley had written, quoting Aeschylus, at the end of her first journal. What sin, she wondered, could have merited such relentless punishment?” (Mary Shelley, by Miranda Seymour).

Here is Mary Shelley berating herself for the loss of her three infant children in less than five years. If they hadn’t gone to Italy, if they hadn’t been on that road or passed through that dirty street, if she hadn’t been convinced to follow her impulsive husband around, perhaps her children would not have fallen ill, perhaps they would have lived. A torturous litany of what-ifs. For a self-proclaimed atheist, her sudden sink into a belief in divine retribution is telling, and points to the depth of her despair.

The Danish healer tried to soft pedal karma in our virtual meeting (he knew he was dealing with a grieving mother), but he did insist that all of us benefit and suffer from karmic motion. Of course my initial reaction to the idea that Ronan has karmic weight to haul around or old stories to deal with and/or resolve and this is why he will only live for a few years while gradually regressing into a vegetative state is to look at his chubby baby face and chubby baby thighs and feel angry and helpless. How ludicrous. Why give such a load to a baby? Why dump it on a baby’s parents? Is this another angel moment?

But then why give an unbearable burden to anyone? Why does even the notion of a punitive, brutish and malevolent God/God-like force/All-seeing Eye or Being make anybody feel better? Is it because they think they can direct their lives to avoid bad deeds or sin or wrath? Is it to make people dependent on the idea of salvation if in spite of all that work you’re still born into a human legacy of sin so what’s the point? Who is more worthy (or less worthy, depending on how you think about it), of a load of karmic crap? Who can say who deserves a less fortunate life and who deserves another, “better” one? In fact the idea of “deserving” anything when it comes to life feels misguided from the start. Mothers lost their children all the time in Mary Shelley’s day, and women all over the world still lose their children to war, famine, preventable disease, the many effects of poverty. Women in his country, in 2011, lose their children to abuse, starvation, murder. Some children die at the hands of their parents or their parents’ dodgy and violent friends. Is my perspective on karma simply a byproduct of my privileged life and the fact that death has not confronted me full-on until now? Is my worldview, which I like to think is so expansive and inclusive and enlightened, actually quite limited in this respect? Am I just being close-minded? Do the crazy angel people have a point?

This fall I was walking with Rob on the arroyo path near his house in Santa Fe when a woman passed us, curious about the baby contentedly snoozing in the front pack. After I told her Ronan’s name she repeated it and asked me if I’d had him baptized yet. I said no and walked on, making light of it. We passed her again, she asked again about the baptism. What about Ronan? She asked. Rob told her, quite rightly, that she was being rude (he said it in the nicest way), but days after Ronan’s diagnosis I found myself haunted by this question. Was that woman some kind of special seer who knew that my baby was sick long before I did and was giving me solid advice about how to help him? What about Ronan? Had I failed my son by not having him baptized? Had I failed to protect him somehow by not assuring his safe passage through purgatory and into heaven with all the other doomed babies? Or is baptism, as Simone Weil believed, just a big bowl of dangerous group think? When we were taking Infant Care 1 the teacher was sure to remind Rick and me that a baby can drown in just an inch of water. Is the baptismal font full of enough water for a person – not just a baby — to drown in?

Several years ago I was walking Other Em and Paul’s son Coll to his school in south London. A fearless kid, he wanted to run ahead and promised to stop and wait for me at the corner before crossing the street. He assured me several times that this would be perfectly acceptable to his parents. I was pushing his sister Anita in the stroller, watching his blonde hair flapping in the wind, dust flying up from the soles of his shoes, buses and cars roaring past. Nervous, I frantically called him back to me. “If it’s okay with you, I would like if you’d walk next to me,” I said, trying to mask the terror so evident on my face. (When he was just weeks old I took him for a brief walk in the stroller and didn’t take one breath the entire time.) He was annoyed, but he patiently walked with us to the schoolyard where he finally turned to me and said, “You can leave me now.” I panicked. Could I? How did I know what was going to greet him on the jungle gym, in the classroom? Who can say that my protectiveness on the street meant anything at all? Being vigilant in one potentially dangerous moment was no safeguard against future trouble. Anything could happen at any time. Some wounding comment might be made and never forgotten, some maniacal swing from the monkey bars might end in a life-threatening free fall. No, I simply could not leave him at this school, where physical and emotional disaster lurked in every kid-occupied corner. I looked around for the teacher, prepared to tell her that I was taking Coll home, and trying to think of a plausible reason why this would be necessary. But before I could find a single adult he had run off, happy to be free of me, and I turned the stroller around and headed back to the house, Anita chattering along as we bumped across the park. Em’s garden faces the schoolyard of the primary school, and all afternoon I tried to comfort myself with the roar and flow of children playing beyond the wall. It’s a scary word, beyond. It looms. Like a big stretch of rocky, unseen road you are asked to navigate in the dark without shoes. But I heard laughter and bouncing balls. Happy shouting that was vigorous without sounding panicked. No sounds of disaster, no shrieks or gasps. I assured myself that someone would be looking out for him, that he’d be fine. Still, I was relieved when he returned home. It felt like a small miracle, and I couldn’t imagine reenacting it each day. How do parents do this? I wondered.

How do we know when to leave people behind and when to send them off? How do we ever know where we’re sending them? I often feel that I have unwittingly brought my child into a world in a body that cannot survive. How will I know when to let him go? What signs are given to parents? My husband’s grandmother was sent away from Radomyshyl, a shtetl in the Ukraine, when she was still a child. The pogroms were getting worse; hiding in walls was becoming routine, people were getting their heads bashed in (one of her brothers) and her parents wanted Rose, their smartest child, to have a different life or a chance at life full-stop. They could only save her by letting her go. For Rose’s parents in 1918, putting their not-yet-teenaged daughter on a cart out of that village was tantamount to sending her over the edge of the earth. She never saw them again. Rose finally made it first to West Virginia, where she fell in love with a Catholic man, after which she was promptly moved to Brooklyn, where she was housed with distant relatives to clean their house and cook their meals. She did eventually meet and marry a Jewish boy and everyone was pleased.

Letters from Rose’s sister stopped arriving during the early 1940s, and she later learned that the entire village was wiped out in a single afternoon. Every member of her family, lost. Years later that girl, a grown up and married Rose, not yet a mother, would find herself in a Brooklyn alley on one summer evening, sifting through ripped open garbage bags, pawing through coffee grounds and food scraps and soggy paper with her husband Philip, the two of them searching for the ring I now wear on my finger, the ring Rose realized must have fallen into a bag of trash while she was cleaning and that was the only thing of value she had ever owned. This life, never known to her parents, forever lost to them the minute she rolled out of the village on a horse-drawn cart. How would they recognize her in the afterlife? Changed but also irretrievably theirs? Would she wear a certain hat at a predetermined tilt? Would there be a handkerchief of a particular color peeking out from a pocket?

My friend’s grandmother stood in an Amsterdam church in 1939, and when a woman wearing a red scarf passed her pew, she handed that woman her baby girl, who would be hidden with a Christian family for the duration of the war. The instructions were to smile and act casual, as if the woman in the red scarf was the actual mother of the child, come to collect her and take her home. The real mother had to repeat this ritual twice, relinquish her child twice, as the first family was “compromised.” I imagine this mother who had already lost her parents and brother to debilitating poverty in a Polish shtetl (her brother to a diabetic seizure; her father in an accident that burned him alive), sweating in her high heels, pretending to know the Christian prayers, holding her baby to her chest, watching the women file past her, waiting for the glimpse of a red scarf, her heart wild and panicked in her chest. Six years later, when they were reunited, the girl did not recognize her mother. She clutched at her crucifix and felt afraid. And Rose’s parents, watching their youngest daughter bounce out of the village in a rickety old wagon, armed with Yiddish and Russian, a few words of German, and enough money (they hoped) to get her, eventually, to the United States.

As a parent, I want to know what’s waiting for my son at the end of his life, I want an inked scroll with an official stamp that can tell me what will happen, and I want to get him to the end of his short life with dignity. How will he be ushered to the other side? (You pressed a coin into his palm and stepped across the water – Dana Levin, from “Styx.”) I want to enjoy each moment he has with us in this life, which means I must learn to feel less tortured and less afraid. Otherwise, I will not be able to mother Ronan the way he deserves, and I don’t have that much time to sort it out.

I speak mostly with parents of terminally ill children who share my philosophy of care approach: minimal intervention, maximum life experience. But when the body doesn’t make the decision for us, how do we know when to leave one another? How do we know when to let go? How will I know what to do in that moment when a decision is required of me? What will be my guide? Motherly instinct, whatever that is? The harshness of scientific fact? What speaks to me in Phil’s poem is the implication that any afterlife we imagine is so limited that the only thing we can do is let go of the hat and trust that it will land. We might never see it; we might be the only ones who ever do.

Nobody gets a free pass. The stories I heard from some of the other Tay-Sachs parents has absolutely confirmed this. Just because you watch your child die does not mean you won’t shepherd your parents through a debilitating illness, or that you won’t get cancer, or that your husband won’t die in a car crash. Although my great fear while I was pregnant was that they’d gotten it all wrong and my birth defect was genetic, part of me believed that I’d earned a bit of good fortune; that it was my turn to be visited by some grace. But grace is more fickle than luck; sometimes you need a magnifying glass to see it. Sometimes you need super powers. The only thing I have is imagination.

I don’t think anyone gets to come back as anyone else, as the same age-old creature housed in a new body. I don’t believe in heaven. I don’t believe in reincarnation. I’ve said my piece about angels. I wish I believed in something, as I’ve witnessed the comfort these notions give to others. But I do believe in stories as vehicles of grace. Shapes of the afterlife, all of them. The only tools we’re given to survive our losses.

There’s a story that I tell myself when I think about “after Ronan,” whenever that time is and however it looks. It’s not a place I want to visit, but this story helps me go there, and I hope it will help me visit him, or the dream-feeling of him, until I’m old and have forgotten everything else. It’s part memory, part dream, part wishful thinking. Perhaps it will change and shift. Perhaps more people will move in and out of the narrative, but this is how the story reads right now, today. Ronan: in Irish, little seal. Ronin: in Hebrew, song.

The afterlife story is this: I’m on Inishmore, an island off the West Coast of Ireland, walking toward Dun Aengus, an old ancient fort that has been eroding for centuries; half of if has already fallen into the ocean below. I visited the Aran Islands with friends in 1995, but in the dream-memory I am alone. I scale rocky famine walls that criss-cross the landscape, passing cottages and a few isolated people. A fog descends. I can no longer see my hands or where my footsteps are taking me, so I turn around and walk in the other direction, away from the sound of the water. I am curious and unafraid. My mouth tastes of seawater and wet wool. My feet and legs hurt, but not in an unpleasant way. In fact, I feel sporty and alive. My blood is warm and I can hear my heartbeat, steady and fast but not frantic. The color of the sky begins to change; there is sun behind the thick reach of gray-white clouds. Slowly, it gets warmer and warmer. There are more people on the road now, nodding at me as they pass. The sleepy town is no longer sleeping. I walk down the dirt road, past a yard where baby clothes are fluttering on a clothesline, still too wet and heavy to flap in the wind, which is gentle and sea-fragrant. The sun is strong now, almost tropical strength. I reach the shore of a small rocky beach littered with seaweed, sit down, then lie down, and finally fall asleep. I wake up to barking, splashing, and my face pounding with sunburn. Sound echoes and astounds here as it does when you rise from a dream state; it refracts and shifts like light, like moods.

The sun slips behind a bank of thick clouds and when I look out over the water I see them on a jagged outcropping of rock: a few dark seals, their sleek and impossible bodies – so graceful, so smooth — slipping in and out of the water. They move from rock to sea and back again, water glittering like sun-touched glass from their whiskers, tails powerful and flapping. I watch them for a long time, those seals, dipping in and out of the water, cool and calm and singing singing singing singing singing…

EMILY RAPP is the author of Poster Child: A Memoir. A former Fulbright scholar, she was educated at Harvard University, Saint Olaf College, Trinity College-Dublin, and the University of Texas at Austin, where she was a James A. Michener Fellow. She has received awards and recognition for her work from the Atlantic Monthly, the Mary Roberts Rinehart Foundation, the Jentel Arts Foundation, the Corporation of Yaddo, the Fine Arts Work Center in Provincetown, and the Valparaiso Foundation. She was the Philip Roth Writer-in-Residence at Bucknell University and has received a Rona Jaffe Writers’ Award. Her work has appeared or is forthcoming in the Los Angeles Times, Salon, The Sun, The Bark, The Texas Observer, Body & Soul, Good Housekeeping, and many other publications. She has taught writing in the MFA program at Antioch University-Los Angeles, where she was a Core Faculty member, UCLA Extension, the University of California-Riverside Palm Desert Graduate Program, the Taos Writers' Workshop, and the Gotham Writers' Workshops. She is currently professor of Creative Writing and Literature at the Santa Fe University of Art & Design in Santa Fe, New Mexico. She is currently at work on a novel and a new memoir, Dear Dr. Frankenstein, which chronicles her life with her infant son, who is dying of Tay-Sachs disease. Excerpts from the book can be found at http://ourlittleseal.wordpress.com and you can visit her at www.emilyrapp.com.

19 Responses to “Against Angels”

These pieces are incredible, Emily.
I wish I had answers. I wish I had comfort. I wish I had words – but everything that forms in my mouth seems useless.
For what it’s worth, I think you are so brave and so wise and so loving. What a wonderful mother Ronan has in you.

And the imagined life and dreams that you construct around him, your vision of the experiences and life he might have led.

I think this second one is where all the helplessness and anger and recrimination come from.

But it’s a phantom, it’s not real, wouldn’t be real even if he outlived you, to age 90. Those things aren’t his nor yours, never were, never would be. Once those fade, you’ll be left with what simply is and actually was. And by all appearances, those things that are left are precious and joyful.

Sorry to spout platitudes at you. When there’s really nothing you can say, sometimes your mouth just moves and sound comes out anyway.

Yes, I think that’s true — that two-tiered mourning; one being the physical and the other being — well, just stories, just narratives. Stories haunt us AND they help us live. Not platitudes at all. I think it’s true that we try to “own” or “claim” our experiences, but that, too is a fantasy. I’m always needing to be reminded of that.

Emily, I don’t think you need to be reminded of anything. Believe what you believe. And it would be utterly bizarre if you didn’t feel anger, recrimination and helplessness.

Echoing Zara’s point, I wish I could do more. Not out of some messianic belief I could alleviate your horror but just on a human level, I wish I could lessen it a bit.

You’re a magnificent writer, but you must know that by now.

Like many of us, I know from experience well-meaning individuals–or hell, sometimes they’re just shallow–say truly ridiculous shit when someone is dying or dies. You’re entitled to call them on it and wish they’d shut the fuck up. (When my partner died suddenly, an acquaintance kept badgering me to try aromatherapy. She couldn’t understand why I refused to–literally–smell the roses. I can only hope she never fully understands how wrong she was.)

If someone suggests aromatherapy, I think I will introduce them to my fist. =) I did have a woman tell me I should read that nut-o book “the Secret” because I clearly attract bad luck to myself. Gee, thanks. But yes, people say ridiculous stuff. They don’t think bad things will happen to them if they’re good people, but they’re wrong. Not that I wish ill on people, but I wish people would wake up to the fact of their mortality — like, really wake up — not just for an hour in a yoga class.

I definitely agree that there’s no “work” here for us to do vis a vis Emily and her situation. Perhaps the only saving grace for any comment at all is that its meant with good intentions, no matter how far off the mark it may fall.

I think I was mostly reacting to the C.S. Lewis quote, which I thought was a completely bullshit thing for him to say, about “the maternal happiness must be written off.” I find that to be an insensate and banal bit of thinking on his part, that seems to be devoid of parental experience.

There are others who have been where you are, but they can be so hard to find. We all bear a different mark. Witnessing his young life is to be at the precipice of such an enormous love, big like an Eden-world hidden inside some ancient volcano. To see it taken from you both, to behold that Eden and simultaneously its loss… this is to face true helplessness and powerlessness.

It’s no wonder some invoke angels (so detestable) , but the angel they never mention is the one with the flaming sword. The one that casts out and closes the gate, by whom nothing is ever granted, before whom nothing may be negotiated. In the face of such staggering demotion, injury and endless hurt, an unspeakable sadness does reign. For a long while, that sadness becomes something you *can* do, it’s somewhere you *can* go. ( No matter how wrong it may seem to now conceive of true horror, or grief, or Eden, or sadness in this strange way, it’s far less wrong than your loss, for which I am so very very sorry.)

There are others that have lost what you have lost, new friends. And they are somewhere you can go, too, when the time comes. I am no kind of believer, and certainly no angel. But I’ll hope for the end of your suffering, and the end of Ronan’s suffering, and wish that human love, understanding, and mercy surrounds you both, now and until your last moments on this earth.

Interesting about him and the parental experience — he did have step children, and they do appear in the book, but the main focus was on the loss of his wife. I wish I knew more about his experiences with parenthood. He also uses a lot of amputation metaphors, which I take issue with, but then I think, well, in those days, to lose a limb WAS tantamount to losing a big chunk of your life. Now I see it as just a dating of the book, which of course is as imperfect (to me) as it is profound.

What a beautiful comment. Thank you. What’s been so powerful about this experience is meeting people who HAVE been there, and know. I feel like I have connections with people I might otherwise have ignored, or never known, or even, to my embarrassment, dismissed. In one part of A Grief Observed Lewis talks about his dead wife as lifting a hefty, flaming sword, a kind of rendering of violence in the midst of peace. Very interesting and powerful moment in the book, and reminds me of what you’ve written here, for which I thank you.

Sometimes that is all there is to say. Just a moment of connection. Thank you for sharing your story and the gift of your writing. As a motherless daughter and a widow, I too have endured the stupidity (well meaning or otherwise) of others. And so all I can say, because I have not walked your path is:

I wholly agree on all points, Emily. (And your “fist” line cracked me up.) I don’t wish harm on anyone, either, but also remain baffled by how many think banality like “The Secret” will inoculate them. They’ll find out eventually life regards us all as fair game. And that, as you note, we’re among the luckier ones throughout the world and throughout history. As I said, you’re very wise, but I wish you didn’t have to be.

I am so sorry Emily. This was simply gut wrenching to read. That you can write so beautifully and honestly in the midst of your loss is just amazing.

People really are trying to help. They do think their platitudes will give you comfort. I know my cousin didn’t mean to enrage me when he said “He’s in a better place now” (on a facebook comment) referring to my recently deceased father, but enrage me he did. Upon receiving yet a THIRD copy of “Heaven is for Real” in the mail from another well meaning relative, all I could do was open it up and toss it quietly in the recycling bin.

I love the imagery in your last paragraph and hope it gives you many comforts.

I agree – I do think people want and do try to be helpful, and sometimes they make it about them — as if they really COULD be helpful, when nobody can. I saw Heaven is for Real in the storefront of a hospital gift shop, and I’ve heard about it. Ugh and double ugh. Maybe at the heart of this whole discussion is a false belief that we, with our egos, think we can help. Some situations just require witness, and there’s nothing more to be done or said. That said!, I often do the same to people who are in a different situation from my own, but a painful one nonetheless. So I suppose there’s no right way…